A Body’s Improbable History

Emma Bolden

The first time I read about Karin Klein, I was thirty-three and working on an essay that had grown into something larger, something I wasn’t sure that I’d be able to handle. It, whatever it was, was about the struggle with reproductive health—endometriosis, adenomyosis, polycystic ovarian syndrome, fibroids, adhesions—that had defined my adult life and, since I started my period when I was ten, my adolescence and part of my childhood, too. I was writing about what it was like to live, all of that time, inside of the curve of a question: would I be able to have a baby before it was no longer possible? Every doctor I’d seen since age thirteen told me I might not.

I started a race against time when I started puberty. At thirty-three, I lost that race. A few months before I started writing, I’d undergone a total hysterectomy with bilateral salpingo-oophorectomy: the complete removal of my uterus, ovaries, and fallopian tubes. My question had been answered. I didn’t know what the next question was, or if there even was one. I didn’t know what to do, really, and so I started writing. Though I knew it wasn’t true, I couldn’t help but feel sometimes as if I were the only woman who’d lived like this, who’d tried every medicine, even ones I knew might damage my body permanently; who’d battled her own body in an attempt to reach a goal that her doctors weren’t sure was attainable in the first place; who’d lost that battle; who’d found herself on a quiet Sunday in a quiet house quietly drinking coffee and wanting to scream. I wanted to know if I was alone. I wanted to stop feeling so unspeakably lonely.

And then my writing led me to Karin.

_______

Karin Klein was the plaintiff in a court case filed in 2008, the first case involving a woman’s use of Lupron, a medicine initially used to treat prostate cancer but later used to treat endometriosis, uterine fibroids, and, as Lupron Depot-Ped, precocious puberty. Its numerous side effects include “loss of bone mineral density (BMD),” convulsions, clinical depression, and pain. “Bone loss,” according to the Lupron Depot website, “might not be completely reversible in some patients.” It’s a medication I’m highly familiar with, as I went through multiple courses of treatment between the ages of eighteen and twenty-two. I’m highly familiar with its side effects, too—many of which, in my case, were definitely not reversible.

In 2005, at seventeen, Karin began a six-month course of Lupron; I began my first course in 1998, just after turning eighteen. Her doctor assured her that any adverse effects would disappear when she stopped taking Lupron. My doctor assured me of the same thing. Five years after her last shot, Karin wrote that the adverse effects remained. She had, in her words, been “diagnosed with chronic autoimmune Hashimoto’s thyroid disorder (progressively getting worse, my immune system is constantly fighting), severe bone density loss, spinal disc degeneration (debilitating neck and back pain), fibromyalgia (chronic pain and fatigue), hormonal disorder etc.” We shared all of these diagnoses except for Hashimoto’s thyroid.

I watched an online video of Las Vegas ABC 13 News reporter Darcy Spears interviewing Karin Klein for an investigative series about Lupron’s effects on women. Karin—who, by this point in my research, I couldn’t help but think of by first name—says in the interview, “All victims have the same health problems. They have autoimmune disorder, chronic pain, they are suffering from day to day, every day, they are in pain and tired, they cannot work, they cannot take care of their children, I'm unable to get pregnant.” I said “yes” after every phrase.

I remember that video. I have notes about that video. But seven years later, when my essay became a memoir that would soon be published, I looked for the video again. It was gone—along with just about every trace of Karin and her experience.

Much of my own medical history has been one of erasure, in which doctors attempted to alter the experiences I and my body have had, rewriting my personal history with their explanations—or lack thereof. And it’s a difficult thing, dealing with a medical problem that medical professionals deny, even when there are physical symptoms. No matter how many times I lay down on the examining table and its uncomfortable paper, no matter how many times I listed my symptoms while holding a medical gown closed behind my back, my doctors wouldn’t admit that the problem exists. And no matter how many times they responded in this way, I couldn’t make myself believe there was no problem. How could I, when the symptoms remained?

I sold my memoir, The Tiger and the Cage, in 2021. For a week afterward, I couldn’t breathe. Out of shame, I had kept the story of my body a secret for so long. Now, it no longer felt like a secret, but I couldn’t stop it from feeling like shame.

I started my revisions slowly, focusing first on checking my sources. This allowed me to slowly re-enter the world of the book, which was the world of my illness and all it had destroyed in my life. It was also, in part, a way to face this with company: the women I’d read and written about whose stories supported mine, who’d made me feel less alone. They helped me to breathe. I started with my research about Lupron Depot and Karin’s case. I copied and pasted links to the sites where I’d found her.

Nothing.

Surely I’ve made a mistake, I thought. Surely I somehow left out part of the address. I tried again. I failed. I tried the next link. The next link. The next. Fail, fail, fail.

Karin Klein had disappeared.

Three years after my hysterectomy, I still bled so heavily and regularly that I began to track it in my planner. And then, in a few months’ time, a pattern emerged: the bleeding episodes happened every two weeks, exactly like my periods had.

I made an appointment with my doctor. It seemed like the right thing to do.

“Well,” he said during the vaginal exam, “I’m not seeing any blood here.”

“I wasn’t bleeding this morning.” I tried not to look at the doctor. I tried not to think about what the doctor was looking at as I tried to talk to him, since that would be the only opportunity for me to talk to him. Once the speculum was out of my body, the doctor would be on his way out of the room. And fast.

“I bled last week, though. Red blood,” I said and with emphasis, as if this would make him take me seriously.

The doctor shook his head, still looking where I didn’t want to acknowledge him looking. “But you aren’t bleeding now, and if I can’t see it, I can’t do anything about it.” My mind translated his words, effortlessly: If I can’t see it, it doesn’t exist. If I can’t see it, you’re lying.

Perhaps I’d gone crazy. Perhaps my doctor was right, that I had invented the pain and the blood, the cyclical regularity. And when Karin’s story vanished, I wondered if I’d invented Karin, too. I’d wanted desperately not to be alone. Perhaps I’d imagined her well enough to imagine the interview, the testimony, the quotes. Perhaps she was an imaginary version of myself who’d been brave enough to speak out, to fight against what had damaged her.

I had to know, so I turned to the Wayback Machine, a search engine connected to The Internet Archive, “a digital library of internet sites and other cultural artifacts in digital form.” The Wayback Machine allows a person to move through digital time and see what a website looked like on a date in the past. In other words, it lets a person find what has seemingly vanished from history.

I entered the URLs of the sites where I’d seen Karin’s story. I traveled to the digital records from the year I accessed those sites. And there she was: Karin, exactly as I’d remembered her.

Historically, the Internet Archive’s Wayback Machine is not the first device with that name. The Wayback, or WABAC, Machine first appeared in 1959 on The Rocky and Bullwinkle Show in an ongoing segment called “Peabody’s Improbable History.” The cartoon Mr. Peabody, a dog genius who graduated “Wagna Cum Laude” from Harvard, invented the Wayback/WABAC Machine in order to educate his adopted (human) son, Sherman. The machine allows Sherman and Peabody to visit historical times and figures: Cassanova, for instance, and Jim Bowie, creator of the knife that bears his name. 

For my body, history repeated itself: I started bleeding two weeks after my visit with my gynecologist. As soon as I saw blood, I walked straight from the office bathroom and out of the front door and into the front seat of my car, sauna-hot in the Alabama heat. Here is one thing that I have learned about doctor’s offices: there are always emergency appointments, loose pockets of time sewn purposefully into a doctor’s schedule in case of an emergency. I learned this because I’d been given several of these appointments in the past, when I still had a uterus, when I wasn’t a mystery who shouldn’t have a red stain on her Hanes Her Ways.

Sweating in my sweltering car, I called my doctor’s office. When prompted, I pushed zero for the receptionist. I told her I was experiencing vaginal bleeding. I told her that I had undergone a total hysterectomy. She asked for my name, and I heard her fingernails tap against the keys as I sat, pen uncapped, ready to write down my appointment time on the back of a receipt.

“So you are experiencing a problem, right?”

My pen scratched a line onto the receipt. “Right. I’m bleeding, but I don’t have a uterus.”

“I’m sorry, but if you are experiencing a problem, you can’t come in,” she said, and before I realized it, my pen turned the line into a question mark.

“I’m sorry?” I looked at myself in the rearview mirror, just to make sure I was actually here, having this actual conversation on my actual phone.

“Ma’am, if you are experiencing a problem, I can’t make you an appointment. You can’t see the doctor.”

It was almost as if we spoke different languages from different dimensions in different realities. I wondered, briefly, if she was being held hostage. If she was playing the opposite game. I looked at myself in the rearview mirror to make sure I was actually on the actual phone. My expression said, can you fucking believe this? The me in the rearview looked back at me. She was indeed on the phone. She could not fucking believe this either. “But what if all I have is problems?” The receptionist didn’t say anything, but then again, she didn’t have to. If I understood anything, it was that the logic I faced when trying to receive gynecological care was very little like logic at all, and guided mostly by denial.

If a problem isn’t acknowledged by anyone else, can it be said to be a problem? If a doctor refuses to see or acknowledge a problem, is he absolved of all responsibility for treating it?

I know: I should have called the receptionist back, demanded to speak with my doctor or a nurse or a supervisor. I should’ve called a new doctor at a different practice, right then and there, in my sweltering car. I should have, but I didn’t, not right then and there in my sweltering car or later in my office, in my home. I was terrified at the thought of having to recount all of that history to a new doctor. I was terrified, too, that the new doctor wouldn’t believe me or my history, that the next new doctor wouldn’t either, or the next or the next. It had happened so many times before. I couldn’t face the thought of it happening again.

Karin Klein’s trial lasted a week and a half. Darcy Spears reported that the judge refused to admit the following materials: information about a 2001 criminal misconduct trial against the company that manufactured Lupron, articles about adverse effects published in peer-reviewed medical journals, adverse events reports issued by the FDA, and several medical records regarding Klein’s own case. The federal jury decided in favor of Abbott Laboratories, the then-makers of Lupron Depot.

In a statement, Abbott Laboratories wrote: “We're pleased the jury found Abbott not liable for the plaintiff's alleged injuries. Lupron is an important medication for the conditions it treats and the therapeutic risks are documented in the prescribing label.”

I’m ashamed to write it, but my fear won out. I didn’t find a new gynecologist. After my conversation with the receptionist, I saw him once a year for my annual exams. During the fifth annual exam, he told me that things had improved. “I used to see rust-colored spots,” he said, “and they’ve cleared up.”

“Rust-colored spots? Were they blood?”

“They were rust-colored spots,” he said.

Later, I found a fragment of Karin Klein again—or, at least, a reference to her. I wasn’t looking for her. I was instead investigating a suspicion: whether there was a connection between my diagnosis of degenerative disc disease and my prior treatment with Lupron. Degenerative disc disease is, my doctor informed me, a version of a normal process in which the discs between vertebrae break down. This, according to the department of Neurosurgery at Columbia University’s Irving Medical Center, happens to 90 percent of people by the time they’re sixty years old. I was forty. When that normal process causes pain, it’s called “degenerative disc disease.” In my case, the degeneration led to a herniated lumbar disc that compressed my sciatic nerve.

In “Women Fear Drug They Used to Halt Puberty Led to Health Problems,” a 2017 Kaiser Health News article investigating the use of Lupron to delay puberty, Christina Jewett finds that yes, there may indeed be a connection between Lupron and degenerative disc disease. Between 2007 and 2017, according to the article, “[m]ore than 20,000 adverse-event reports have been filed with the FDA” describing “‘cases of insomnia, depression, joint pain’ as well as dozens of cases of bone problems, such as pain or disorders, and the inability to walk,” particularly from young female patients.

This is where Karin’s case comes in: in her lawsuit, she said “that she was not adequately warned of the drug’s effects and after taking the drug as a teen for a uterine condition, developed degenerative disc disease, jaw-joint dysfunction and bone thinning, court records show.” A doctor who previously worked as a medical officer for the FDA confirmed Karin’s claims, stating under oath that Lupron “causes ‘irreversible side effects and permanent severely disabling health problems.’” After losing her case, Karin was “denied appeals up to the Supreme Court over what her attorneys argued were unfair limits on the expert reviews, scientific studies and adverse-event reports that could be shown to jurors.” Karin then disappears from the article, though Lupron stays: in 2015 alone, Jewett writes, Lupron sales totaled $826 million.

On Rocky and Bullwinkle, there is a significant problem with Mr. Peabody’s Wayback Machine: its use changes history, usually in a ridiculous but very important way. The machine therefore doesn’t exactly fulfill Peabody’s dream of educating Sherman; instead, Peabody and Sherman must find some way to “fix” historical events by changing things just enough so that history looks the way that it should. There’s a struggle between man—or, in this case, cartoon dog—and machine, a struggle in which the way events are viewed changes them, and even if things return to their “right” course, something has changed irrevocably, and it’s impossible to tell or view the story the same way again.

_________

Almost a year to the day that my herniated disc was diagnosed, my second nerve block wore off, and the pain was wearing on me. My doctor referred me to a new specialist to find out if anything new had gone wrong. My mother went with me to the appointment: she’d be the one driving me to and from any procedure, and so it made sense to have her there for scheduling.

I have never felt so glad or so guilty to have someone in a doctor’s office with me.

The new specialist took new X-rays and compared them to my old MRI. The herniation was worse, he said, and I now had bone spurs and spinal arthritis as well. Two discs above and one disc below had also begun to herniate. The doctor said that he wouldn’t recommend surgery; I said that was a relief. “Your back is bad,” the doctor said, “but I cannot assess your pain.” I looked at him, expectantly. I asked him what he meant.

He meant that the pain was never coming from my back. He meant that the pain was emotional, that it was all in my mind.

I looked at my mother, who looked back at me. We gave each other our “you have got to be kidding me” looks.

“Oh no,” my mother said. “We’re not going there.”

But the doctor insisted on going there. “I treat the entire patient,” he said. “The whole of the patient. You’ve had a hysterectomy, correct?”

“Yes.”

“And you didn’t have children.”

“No.”

“Or get married.”

“No.”

My mother started to protest again, but the doctor spoke over her. “That has to leave a great emotional disturbance. That has to be the cause of this pain. You’re just not introspective enough to have examined your pain and discovered its source.”

“Well, I wrote an entire book about it, so I’d say I’ve examined it pretty well,” I said. I did not say what I was thinking, which was this: no matter what else I am, no matter what else I do, for him, this will always be the center of my story. This lack. This absence. This failure. No matter what else I do, this is the story he’s going to see.

I realize: I should have been furious. I should have been absolutely furious and I should have argued against him, using his own words. He had, after all, just showed me clear evidence that medical imaging had, multiple times, proved that the problem was in my body, not in my mind. Instead, I just thought, what’s the use? I knew that no matter how strong the argument was, there was to be no arguing with this man.

All I wanted to do—all I could do, I knew—was to stay quiet so I could leave as quickly as possible, so I did.

The Wayback Machines imply that the past is not a solid fabric—at least, not the past the way that we see it, in terms of information stored and waiting on the web. There are other narratives, other players. There are lost lawsuits and vanished testimonies. There are altered and misread and missing stories. There are women like Karin who dared to raise their voices against those who had hurt them, who had changed their very bodies and the lives they lived in their bodies into something unrecognizable. There are women whose stories had been erased, as if they had never existed at all, our bodies all ghosts in the literal machine.

________

I thought, for a while, about trying to find Karin.

The idea rock-tumbled its way through my mind for weeks, but all that happened is that it broke into more questions. If I were her, would I want to be found? How would I feel if a complete stranger appeared in my inbox and brought back a nightmare from which I thought I’d awakened? What if she vanished not because of a lawsuit but because of her own trauma? Because she just couldn’t take not having control over her story anymore?

It took nearly a decade for me to finish my memoir. I couldn’t see the narrative clearly. I had no idea how to structure it. And nearly every time I spoke with a doctor, they tried to shift my role in the story. In their words, I wasn’t a patient who suffered from the effects of a disease and its treatments: I was the cause of my suffering. In their words, I was the antagonist, not the protagonist. I had done all of this to myself.

Only when I’d read the stories of other women was I able to see and tell my own story. Only then could I reclaim, could I say, this is the truth. This is what happened to me. And only then did I realize why I was writing: in the hopes of giving other women the ability to do the same.

In the end, I didn’t try to find Karin, largely because the Karin who now exists isn’t the Karin I would be trying to find. The years have passed for her as well as for me, and they’ve inevitably done to her what years do. Changed her. Turned the person she was into the past. Into history. And perhaps because it has happened so many times to me, I want that history to be the story she needs it to be. To lead her to the place she needs to go. And I hope, in her case, that place is peace, a peace where her body and its story are her own.

Emma Bolden is the author of a memoir, The Tiger and the Cage (Soft Skull), and the poetry collections House Is an Enigma, medi(t)ations, and Maleficae. Her work has appeared in such journals as The Gettysburg Review, Mississippi Review, The Rumpus, StoryQuarterly, Prairie Schooner, New Madrid, TriQuarterly, Shenandoah, Ploughshares, and Pleiades. The recipient of an NEA Fellowship, she is an editor of Screen Door Review.